NUI Galway’s Professor Eamon O’Shea (left) with Professor Suzanne Cahill (TCD), Minister for Health James Reilly, and TCD’s Dr Maria Pierce and Provost Dr Patrick Prendergast.
The report estimates prevalence rates of dementia in Ireland; quantifies the economic and social costs of dementia; assesses current service availability for people with dementia and best practice in dementia care nationally and internationally. It was launched on the occasion of the opening of the conference ‘Developing a National Dementia Strategy’.
Creating Excellence in Dementia Care: A Research Review for Ireland’s National Dementia Strategy − is the result of a joint collaboration between researchers at the Irish Centre for Social Gerontology at NUI Galway (Professor Eamon O’Shea) and the Dementia Services Information and Development Centre’s Living with Dementia research programme at Trinity College Dublin and St James’s Hospital (TCD Associate Professor Suzanne Cahill and Dr Maria Pierce).
The report was funded by Atlantic Philanthropies to provide evidence-based research for the purpose of supporting the development of a National Dementia Strategy, which the Government has promised to develop by 2013.
“The next stage of the process in developing a national strategy will require direct consultation with people with dementia, their family members and with all relevant stakeholders to ensure the development of an inclusive and holistic strategy on dementia that will stand the test of time and will reflect the needs and interests of the key stakeholders. Policy formulation and implementation for dementia requires the direct involvement of the Department of Health and consultation with a much wider coalition of interests and stakeholders,” concluded co-author, NUI Galway’s Professor Eamon O’Shea.
Commenting on the significance of the research, Trinity Associate Professor Suzanne Cahill said: “At a time when across Europe, much progress has been made in mobilising joint action in the fight against dementia, dementia remains hidden and largely invisible in Ireland and is a hugely underfunded and underprioritised health issue in the country. Several countries including England, France, Norway, the Netherlands, Sweden and Australia have now well developed strategies, some indeed being onto their second and third iterations. The recent government promise of a new National Dementia Strategy for Ireland by 2013 is both opportune and timely. Although the number of people with dementia is set to rise significantly, having an evidence base available to inform the direction of future public policy on dementia makes it a lot easier to design care services supporting the individual and family members to live well with dementia and to die in dignity with dementia.”
There are about 41,740 people with dementia in Ireland*, of whom 26,000 live at home. An estimated 3,583 (approximately 8.6% of all people with dementia) have early onset dementia. Approximately 4,000 new cases of dementia arise in the general Irish population every year and the incidence of dementia is higher than cancer and heart disease with numbers expected to more than treble over the next thirty years.
The research review suggests that the majority of the 26,104 people with dementia living at home in the community most probably do not have a formal diagnosis. This has implications for individuals and families planning for an uncertain future and for developing appropriate pathways to care. There are an estimated 50,000 family carers in Ireland looking after someone with at least one of six specified symptoms of dementia. The review suggests that about two-thirds of all long-stay residents in the country have dementia with many of these people again not having a formal diagnosis.
The economic and social costs of dementia
The report estimates the overall cost of dementia in Ireland to be just over €1.69 billion per annum, 48% of which is attributable to informal care provided by family and friends to those living with dementia in the community. A further 43% is accounted for by residential long-stay care, while other formal health and social care services contribute only 9% to the total costs of dementia. Consistent with per capita estimates from other countries, the average cost per person with dementia in Ireland is estimated at €40,500. Improving care in the community and providing greater support for families will require additional public spending, including having to make difficult choices about the reallocation of some of the existing institutional resources to community care given the perilous state of the public finances.
Gaps in Service Provision
In Ireland, early diagnosis, and sometimes any diagnosis, is the exception rather than the rule and Irish GPs like their European counterparts experience difficulty diagnosing this illness and would welcome more training and resources.
Family caregivers are the linchpin to the success of community care but only a small proportion of people with dementia are receiving critical services such as day care, public health nursing, home care packages and respite. Community care services for people with dementia and their carers remain under-developed, inequitable, and fragmented. In this country very few people with dementia have been allocated a case manager (the approach taken in some European countries) to directly represent their interests.
One of the resounding weaknesses of Irish home care services is that these services are not underpinned by legislation nor are they provided on a statutory basis. In the absence of the required level of community support, people with dementia will continue to be placed in long-term care prematurely.
People with dementia sometimes end up in hospital A&E departments or as in-patients in these hospitals, settings far from ideal given their unique and complex needs. Formal assessment and diagnosis of patients admitted to hospital who might have dementia is a necessary condition for better care and support, including appropriate long-term placement. A review of care for people with dementia in acute care settings in Ireland is urgently needed. A dementia champions’ programme in acute hospitals would facilitate a more person-centred approach to care.
Two thirds of people in long stay care are estimated to have dementia. In Ireland there are few alternates to the nursing home model of care and whilst some facilities have dementia specific beds these are the exception rather than the rule. International evidence suggests a trend towards providing care for people with dementia in long-stay settings in small-scale (maximum of 8 to 10) homely and specialised care settings.
Key elements for the new Strategy arising from the research:
- greater emphasis on primary prevention and on ways of avoiding or delaying the illness particularly through reducing heart disease and stroke
- enhanced public awareness about dementia
- early diagnosis through improving access to memory clinics and enhanced multidisciplinary training and education in dementia for primary care workers, hospital staff and people working in long-stay settings
- case management models of integrated care
- expansion of dedicated and flexible community-based services, for example, day care services and family support programmes, for people with dementia and their carers
- development of new and expanded psychosocial approaches to complement existing medical and neurological models of service delivery in the community and in residential care units
- development of small-scale, appropriately designed, residential care units
- greater awareness, ownership and leadership of dementia in the acute care sector
- further expansion and availability of palliative care services for people dying of and with a dementia
- development of appropriate services for people with early-onset dementia, including people with Down syndrome
- enhanced information systems on the number of people with dementia, severity of the disease, placement patterns and quality of life.